How to explain loss of bowel control to a 9 year old...

[DancesWithPugs]

I'm just going to put myself out here and confess that I lost complete bowel control last night while enjoying a movie with the family. This is the first time this has ever happened to me, and it's more than a little distressing, but I'm hoping it's an isolated incident. Some of you may have read my thread about having found a second lesion in my cervical spinal area, and how I've recently completed a round of Solu Medrol.

Anyway, I thought I'd share with you how I explained my "issue" to my youngest daughter last night after she asked all perplexed, "How did you poop your pants?" If you find my answer helpful, you're welcome to use it yourself:

I explained that our brains are like a really powerful computer and that all the parts of our bodies have important jobs... to send messages to the computer brain to let it know what's going on at all times. The parts are wired through the spinal cord, and all the messages travel really fast through it... instantly. Then I said, my butt fell asleep (quite literally) on the job, so the brain did not get the message until it was too late. Now Ms. Brain is unhappy and filing a complaint with the Spinal Cord and hopefully the lesion will get fired after all the paperwork goes through. LOL

Obviously, I tried to make it sound really silly, especially toward the end, but at least she was able to walk away without feeling worried for me while still understanding what happened.

I'm trying to have a sense of humor about this, and I'm also trying to remain positive. I know that the steroids do a number on your stomach, so it really is my hope that it is just a combination of those, plus the lasting effects from the lesion that will hopefully calm down. Besides, I'm too good looking to be pooping my pants! LOL

[techie]

I can relate to that!

Though my incident was related to putting too many raisons in my cooked cereal!
P. S. I am VERY careful how many I put in now!
techie

[Sir-Voor]

Sounds like you did a good job of explaining it, the only thing I would add is to make sure she does not fear it will happen to her and tell her that you would appreciative her not telling others about it.

So just tell her because of MS your brain does not work like it should, and she will not get MS. Also tell her that there other things the will cause a person poop pants, so is she does get a stomach bug or bad food she not assume she has MS.

[DancesWithPugs]

Oh yes, we've had many talks about MS since I was diagnosed in 2008. I have three kids (15, 13, 9) and I've always believed it's important to be honest, but reassuring with them about everything.

The first thing I ever told them was that I wasn't going to die from this, and the second was that this wasn't going to happen to them. We're all very open and dh and I encourage them to come and talk if they have questions or concerns, which they do. I just got done with another discussion with her about this and she was mostly interested in finding out when she could give me my next shot. LOL She's definitely going into medicine.

I've also told them what my neurologist said when he diagnosed me. MS these days is a nuisance disease that forces those inflicted with it to adapt. It has made me not be the energetic mom I'd like to be, but I make up for it in other areas. It's annoying and expensive, but I'm going to be okay.

Still, I really hope this is a one time thing. Does anyone here know if it could have been a combo of the lesion and steroids?

[Jules A]

I've also told them what my neurologist said when he diagnosed me. MS these days is a nuisance disease that forces those inflicted with it to adapt.

Wow I am floored he would say this to you. What a load of crap.

[Bob698]

This one's easy

"What, like it never happened to you? Puh-lese..."

[DancesWithPugs]

Wow I am floored he would say this to you. What a load of crap.

I should clarify that he said a lot more, but I only chose to share that particular aspect with my kids. He didn't sugarcoat anything, but he also wants me to remain optimistic while dealing with reality.

He's been a great Neuro, no nonsense, yet personable and takes all the time in the world for me when I'm there. Sorry if what I said somehow offended you.

[ShootingStar63]

So far I've been fortunate to be home when this has happened to me, although I've peed my pants while out and about.

So, how did you "clean up"? Do you take a change of clothes with you when you go out? I mean, there you are in the bathroom cubicle with poopy drawers, how do you get out to your car? I get really anxious when leaving the house about all this (literal) *hit. Even at the movie I'm thinking if I need to go, can I make it before an accident because the bathroom is way down the hall.

This stupid disease SUCKS doesn't it.

[Jules A]

I should clarify that he said a lot more, but I only chose to share that particular aspect with my kids. He didn't sugarcoat anything, but he also wants me to remain optimistic while dealing with reality.

He's been a great Neuro, no nonsense, yet personable and takes all the time in the world for me when I'm there. Sorry if what I said somehow offended you.

You didn't offend me but the thought that a physician would minimize this miserable disease as a "nuisance disease" did so thanks for writing back.

There are so many people that are horribly disabled by MS that I take issue when people, let alone a neurologist, down play things like the chronic, progressive nature or the genetic implications.

I'm all for hoping for the best but I think it is equally important to plan for the worst. Good luck with the original issue of this thread! I know first hand how horrible that can be.

[2Live]

Unfortunately, I have dealt with this on more than one occasion. The first time I was in a meeting with 3 VPs, including my boss, at work and I excused myself to use the restroom. At the time I walked with 2 canes and I struggled to get to the bathroom on time-I didn't make it.

Luckily nobody came in that bathroom for over 15 minutes, so I had plenty of time to compose myself. I laugh about it now and joke with friends, but I had just started that job a few months before and it would have been a horrible story to get around. I just went back to my office and IM'd my boss that I needed to run home quickly and everything was okay. I know now that when I need to go-I need to go. My wife and kids hate when we have to stop when we are on car trips, but better safe than sorry.

I think your approach with your 9 yo is great. I have 2 boys (9 and 3) and my 9 yo is very helpful with the little guy if my wife is out of town.
Good luck and remember to keep smiling-it helps you and those around you.

[Tawanda]

I just had to give my 2 cents...

The first thing I ever told them was that I wasn't going to die from this, and the second was that this wasn't going to happen to them.

I've also told them what my neurologist said when he diagnosed me. MS these days is a nuisance disease

In my case, my mother did have M.S., and at 40, so did I. She also died from M.S. related causes at age 45 when I was 8, and my siblings weren't much older. When my 9 year old asks me these same questions, I don't tell her it's impossible, but that it is highly unlikely. I also told her that there were no medicines for my Mom like there is for me now. In the highly unlikely event DD gets M.S., there will hopefully be tons of treatments or even a possible cure or vaccine by then. Had I been diagnosed earlier, she never would have been born, so selfishly, I am glad for the timing.

I also had to comment on your neuro's comment minimalizing the multiple sclerosis experience. I can tell she's never had it! This stupid disease ruined my family's life in one way or another, and I just hope the family curse ends with me.

-T
p.s.

[nightflyer]

Dances with pugs

The last 4 times I've had Solumedrol I had the "rush to the bathroom" issue and didn't make it twice!!! Once at the State Fair and once getting out of bed...the other two I made it to my destination. My neuro said that is common. Usually happens 2 or 3 days after the last day of IVs.